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Wednesday, October 29, 2014

I suspect I could have had this easier, but be that as it may, I searched for bioethics/health care ethics/ medical ethics journal on google scholar to see how they fare in terms of citations over the last five years. I'm afraid the list isn't quite complete as for some reason at least one well-known quality publication, the Kennedy Institute of Ethics Journal, just doesn't pop up. I'm under no delusion that citations do not equal quality, but I do think it is noteworthy that the journal 'Ethics' in particular doesn't do terribly well in terms of uptake of its content. At least if you take its stellar reputation into account. It is possible that ethicists need longer than 5 years before they can respond adequately to the papers published in Ethics, or that a deluge of citations is hidden in monographs and anthologies, disproportionate to the other journals on this list that is, but it's also possible that few of those who praise Ethics do actually anything with its content. I think it is also noteworthy that OA journals seem to have it a tad bit easier to rack up citations. My views about pay-for-play journals are well-known, I won't repeat them here.

Quite possibly the below table will be displayed in odd ways on your screen. If it is, don't hesitate to give me a shout and I'll send you a pdf.

Usual CoI blurb applies. I co-edit two of the journals in this list.
List up-dated Nov 16, 2014.

Tuesday, October 28, 2014

Those of you who have followed the debates on AIDS clinical trial designs could be forgiven for thinking that humans must be unable to learn from history. I am not talking here about the current ongoing quarantine fiasco engulfing the USA. It's unworkable nonsense that has been condemned by pretty much every clinical expert under the sun. Panic is a bad guide for policy decision making. Perhaps next time the powers that are should try evidence based policy decision making. - Not terribly likely, unfortunately.

In any case, The Lancet has currently a debate going about the ethics of placebo controlled randomised clinical involving therapeutic and preventive experimental Ebola agents. The arguments pertinent to this have been - mostly - developed during the HIV/AIDS epidemic when it unfolded in the USA. Here is a review piece I had out a few years back on this subject. Remarkably, the arguments put forward in this context have not evolved at all since the late 1980s.

On the other hand you've the old battle axes from the US NIH bioethics department (Ezekiel Emanuel anyone?) reheating their undying support for benefit sharing in international health research and, of course, their undying support for placebo controlled randomised trials (presumably of post phase 1 experimental agents, but that ain't quite clear). It's the same arguments in favour of placebo controlled randomised trials involving catastrophically ill patients that are being regurgitated in the Ebola trials' debates. Its proponents write 'randomisation and placebo controls are the best means to control for confounding factors and determine whether interventions work or whether patients have recovered by chance.' Or, in another reheating of the same argument, writes David Shaw in a letter to the Lancet, 'but the best way to generate such data is in a randomised controlled trial'. It is entirely unclear what's meant by 'best' here. 'Best' presumably means a non-existent trial population on a planet where desperate patients and their loved ones have not killed health care workers and burned down treatment facilities. It's a planet, let's call it Emanuel-Shaw-landia, where catastrophically ill patients will be happily herded into placebo controlled trials. They are fully driven by a planetary sense of duty, no doubt. - On our planet, we know that such patients will do anything to subvert clinical trial designs they deem unfair. This is where our bioethicists might have taken on board lessons from the heydays of HIV/AIDS activism. Catastrophically ill patients rightly consider a 50:50 chance of getting a placebo a lousy deal. They will go to great length to share the active agents, thereby subverting the placebo controlled trial design, dosing regimes and whatnot. Remarkably none of the historical evidence we have on this count featured in any of the Ebola publications. Zilch. Why bother? Academic memories are truly remarkably short-term these days. Learning from experiences from a time when desperate, catastrophically ill patients responded to coercive offers involving places in purportedly ethical, placebo controlled trial designs by cheating on such large scale as to render a whole lot of research that occurred in those years useless? Na. Let's just stick to our story, the gold standard of placebo controlled randomisation, reality be damned.

In Western countries we have myriads of access schemes designed to ensure that whoever signs up today to participate in a placebo controlled randomised trial does so as a true volunteer, not a desperate patient who has run out of options in terms of accessing experimental agents legally by other means. One of those lessons we learned from HIV/AIDS. No word on any of this in current Ebola papers.

There's another issue that bothers me a bit about this debate. Much is made by everyone of the high mortality rate among patients infected with the virus. Things seem more complicated.

A recent paper in The Lancet reports this, 'evidence suggests that many Ebola infections are asymptomatic,1, 2 a factor overlooked by recent outbreak summaries and projections.3 Particularly, results from one post-Ebola outbreak serosurvey1 showed that 71% of seropositive individuals did not have the disease; another study2 reported that 46% of asymptomatic close contacts of patients with Ebola were seropositive. Although asymptomatic infections are unlikely to be infectious,2 they might confer protective immunity and thus have important epidemiological consequences.'

Much of the hype driving the reheating of the placebo debate is a result of projections likely overstating the future spread of the disease as well as the mortality rate associated with an infection. I wonder whether we will look back at short-cuts to informed consent, and the fast-tracking of ever more experimental agents as a terrible mistake. The little bit of data that we have from the USA suggests that early detection plus good clinical care can bring down the mortality very significantly. In fact, nobody who was treated competently and in a timely fashion died. This sheds a different light on trial justifications flagging the high mortality rate. Trial justifications flagging the high mortality rate that do not take into account that this rate is likely an artificial (ie human created, as opposed to disease created) result of the lack of efficient health care delivery essentially propose that economic reasons are good ethical justifications for clinical trial designs. After all, the mortality rates in question would have been caused by the economic conditions leading to the lack of timely and efficient clinical care for those who actually get sick from the Ebola virus. Perhaps bioethicists should focus again international justice issues. Not unlike in the days of HIV/AIDS, it's about prevention, prevention, prevention, treatment, treatment, treatment. Good clinical care will permit us to dramatically reduce the mortality rate among those getting seriously sick. Perhaps that's where our focus ought to be. Not on a regurgitation of the placebo debates of years-gone-by.

Or, if you really must, take note of the history of this debate. I thought that's a minimum requirement in the academy.

Thursday, October 23, 2014

I have published some time ago in the Journal of medical ethics a piece in which I decry the ongoing abuse of academic bioethics content by sectarian agitprop outlets such as BioEdge in Down Under, First Things in the USA and so on and so forth. I was very clear that I disapprove of their activities.

Last night BioEdge distributed a fundraising appeal quoting me thus, The editor of the journalBioethicshas acknowledgedthat BioEdge has "a larger real-world impact than most bioethics journals could dream of".To be fair to BioEdge, one of my criticism of its website was that it pretends to be a bioethics news website, when really it is a religious campaign operation. In its fundraising appeal it notes that Like everyone else, we do have a bias. We are trying to promote human dignity as a foundation for bioethics.Credit where credit is due, at least folks more professionally involved with bioethics know that 'dignity' is a cover for a particular ideological conviction (while that conviction remains hidden under the cloak of 'human dignity', the term these days operates like a red flag warning of someone trying to sell you snake oil under this pleasing rhetorical cover). This event reminds me of a book that I criticised harshly in a review in a leading medical journal. I ended it with a line suggesting that the book is 'well worth reading' because it shows so nicely how not to go about the matter at hand. BioEdge's use of my quote reminds me a bit of the book's publisher. It quoted the bit it found useful and left out the lengthy criticism that preceded it. Ethical? Not so sure.

Monday, October 20, 2014

A remarkable story is currently occurring in Canada - again. An aboriginal child is suffering from life-threatening cancer. The type of cancer: leukemia. The odds of success if chemotherapy is instituted in a timely fashion: > 90%. The child in question: an 11 year old girl. The girl dropped out of treatment and left hospital. A second child, also 11 years old, also removed from her parents from hospital under similar circumstances has since experienced a relapse.

In both cases the child in question is an aboriginal child. In both cases the parents decided to take it to some holistic healing center in Florida. To date there is zero empirical evidence that the approach taken by this treatment center treats childhood leukemia successfully.

The hospital in question asked a court to direct the local Children's Aid Society to intervene. Remarkably, the Society, represented by a lawyer, took this stance:

"Handleman, the lawyer for the society, said that appropriate steps were taken and after an investigation it was determined the girl was not a child in need of protection. Handleman also stated that her mother was not refusing treatment for her daughter, but simply chose treatment the doctors disagreed with."

Simple, isn't it? There is an eleven year old child suffering from leukemia, the odds of successful treatment with the gold standard of clinical care under those circumstances: 90%, parents remove child for unproven holistic something, Children's Aid Society doesn't quite see what the fuzz is all about. After all, the parents were willing to provide some sort of treatment to daughter, just not the gold standard of care. Problem solved. It's all relative and truly in the air. There is no discernable difference to the Society between the professional opinion of specialists and the parents.

"Obviously our main concern is with the well-being of this child.… This child has a life-threatening illness [and] without standard treatment will not survive, so our sole focus is trying to bring this child into treatment so we have an opportunity to provide her with a long, healthy life."

That apparently is of no concern to the local Children's Aid Society. Not in a case where an aboriginal parent has other ideas about treatment. Indeed, the mother stresses

"'This was not a frivolous decision I made."

Alas, there is zero evidence that the course of action she is currently following has succeeded, ever!

"But Justice Gethin Edward of the Ontario Court of Justice suggested physicians essentially want to “impose our world view on First Nation culture.” The idea of a cancer treatment being judged on the basis of statistics that quantify patients’ five-year survival rate is “completely foreign” to aboriginal ways, he said.“Even if we say there is not one child who has been cured of acute lymphoblastic leukemia by traditional methods, is that a reason to invoke child protection?” asked Justice Edward, noting that the girl’s mother believes she is doing what is best for her daughter.“Are we to second guess her and say ‘You know what, we don’t care?’ … Maybe First Nations culture doesn’t require every child to be treated with chemotherapy and to survive for that culture to have value.”

This sounds almost farcical. The judge apparently doesn't think child survival is what's at stake, but the value of aboriginal society. A nice sentiment so long as you aren't a vulnerable child desperately needing proven medical care. To be fair, the judge is asking these questions. I hope he'll come to his senses and not judge along those lines. - Surely, the essential question here is this: Should we, as a society override parental care decisions for their children in cases where there is overwhelming evidence that they're harming their children irreversibly, or, as in our case, where the children would die almost certainly?

The long and short of it is that we have always done this. The children's (objective) best (survival) interests trump parental best intentions, parental ignorance, parental fanaticism, parental scepticism with regard to mainstream medicine etc etc. Hospitals routinely override parental decisions by Jehova's Witnesses that refuse life-preserving blood transfusions for their children. And they are right to do so. There is no parental right to kill their children, not even with the best of intentions. Anyone recall the cases of children who died because their parents thought prayers would do the trick?

What is not known is whether these two cases (same hospital) are a result of a communications break-down between the health care professionals and the parents. But even if this was the case, it remains shocking that the Children's Aid Society could possibly justify its inaction with the view that the parents were just trying something different. Since when has the life of a child become so cheap that we leave it to misguided parents who wish to do as they see fit, evidence be damned?

Oh, right, I forgot, it's an aboriginal child. If this is a case of trying to make-up for past injustice, let me just say that this isn't quite a sensible way to go about this matter.

Thursday, October 16, 2014

The Globe and Mail newspaper has done a pretty sterling job covering the ongoing proceedings on end-of-life matters in Canada. Reporting has been well-informed and its editorialising has been supportive of the decriminalisation of assisted dying in the country.

Yesterday though, the paper flunked it. It tried to have yet another for-and-against on the subject matter. I don't blame the paper, the issue is currently heard by the Supreme Court of Canada, it's a big issue (right next to that non-issue, Ebola scare in Belleville). The for and against asked Margaret Somerville (mysteriously introduced as one of Canada's best-known experts on the subject) and Arthur Schafer to address the question of whether doctors should be permitted to accede to patient requests for assisted dying. Not unexpectedly, the two contenders had nothing new to say, but nonetheless their comments were the starting point for a lively debate among Globe and Mail readers.

Canadians are legally permitted to ask this question of anyone at any time. Nobody is questioning Canadians' right to request assisted dying (it's about assisted suicide/voluntary euthanasia, btw, not about suicide, dear Globe and Mail). The real issue is whether health care professionals should be permitted to accede to such requests. That the paper didn't quite get to asking its 'best-known experts'. Bit disappointing.

An exciting day yesterday. I listened all day via live audio-video link to the Supreme Court of Canada hearing on the Charter challenge to Canada's criminalisation of assisted dying. Commentators in the national media are broadly in agreement that the Attorney General of Canada made a hash of it, and that the judges' questioning a least appeared hostile to the government's defense of the status quo. I share that view, being not a lawyer and all. I was pleased to see that the Royal Society of Canada Report I had a hand in producing got a mention in various presentations. One of my colleagues on the expert panel, Jocelyn Downie, live tweeted the event from the SCC. I looked at the list of interveners in the case. There's a whole bunch of them, virtually all of whom are Christian activist groups, some more fundamentalist than others. Their presentations were by and large predictable. There was much hand-wringing about threats to vulnerable disabled people. We know today from jurisdictions that have decriminalised that these threats are entirely imaginary. We also know that these hand-wringers cannot even claim to represent the majority of disabled people in this matter. I wonder how genuine these arguments really are. I suspect they are a last ditch attempt at keeping the SCC from declaring the part of the Criminal Code that criminalises assisted dying unconstitutional. The God folks also served other arguments such as the sanctity-of-life argument. One judge asked a youngish evangelical lawyer what this would imply for a possible future introduction of the death penalty into Canada's legal system. Being a conservative the lawyer couldn't quite bring himself to say that the death penalty would also be wrong. Then there was a lawyer representing groups called the Faith and Freedom Alliance and the Protection of Conscience Project. He didn't address the actual challenge but asked that the Court direct parliament to ensure that health care professionals would not be forced to assist in dying if they had conscientious objections. That, of course, is the case already today in matters such as abortion. However, this lawyer wanted to extend conscience based protections. Today health care professionals are legally required to pass the help-seeking patient on to a health care professional willing to provide the requested service. The lawyer wanted to strike out such an obligation. I am not a fan of conscientious objection rights anyway, so I hope the Court will ignore this. - So, all in all, a nice day of theatre on the stage of the SCC. I remain hopeful that we will soon learn that the criminalisation of assisted dying is unconstitutional in Canada. Fingers crossed, with a hopefully upcoming change in federal government, this could actually result in progressive Canadian legislation on this going forward.